What is Superficial Siderosis

Superficial siderosis (SS) of the central nervous system is a rare brain disorder resulting from chronic, and repeated, slow haemorrhaging into the subarachnoid space, and if accurate international figures were obtainable, would most certainly prove to be evenly spread amongst all nations around the world – the small country of New Zealand does appear to have more than its fair share of diagnosed survivors however. People diagnosed with SS range in age from just a couple of years old, right through to their 80s, though the most common age bracket is the 50s and 60s.

Despite being known for over 100 years, it is only in the past few years that SS has been widely acknowledged and studied. Previously known by several titles it was only in 1985 a definite title was applied to the disease. The disease is unusual in that it carries so many side-effects that a sufferer may experience. The symptoms are still being discovered, but currently number over 30, only some of which are common to all, or most, known survivors of the disease.

Prior to the introduction of MRI machines, diagnosis of the disease was carried out on the autopsy table.

Side effects and symptoms

The most common side effect is the lack of hearing, with 95% of those affected. What hearing may be retained, if any, is generally of no value. The hearing does deteriorate extremely quickly with SS and hearing aids provide only short term assistance. Cochlear implants currently appear to be the only permanent life buoy for this side effect.

Ataxia (lack of balance) and loss of co-ordination are the next most common and frustrating side-effects for those diagnosed. Around 85% of all cases are affected with these two debilitating side effects. Mobility aids, such as walking poles or canes, wheeled walking frames, and wheelchairs provide valuable assistance. Many with the ailment advance to a stage where they are bedridden.

Bowel and bladder complications are also commonly accepted complaints.

Side effects vary right down to only two known cases of the 8th cranial nerve being covered in hemosiderin, stopping the survivor from feeling any pain in their teeth.

Known SS symptoms

lack of hearing

imbalance

poor co-ordination

early dementia

bladder complications

bowel complications

headaches

migraines

severe tiredness

short term memory loss

loss of smell

loss of taste

muscle cramps

double vision and other vision complications

cranial nerve palsies

imaginary pains, smells, tastes and sounds

permanently bed bound

failure of the senses

one pupil larger than the other

double sciatica

mini strokes

seizures

speech difficulty

nystagmus

numbness and pain in parts of the body, especially feet

swallowing difficulties

failure to feel pain in the teeth

‘Parkinsons’ type leg and hand wobbles

inability to control emotions – anger, sorrow, etc.

intolerance and uncertainty to heat and cold; may feel roasting hot, but are actually cold

failure of sexual organs – inability to arouse an erection, or no feeling of satisfaction for females